Recently due to a few caregiving issues with my wife's grandmother my father-in-law has found himself becoming sole caregiver(with some help) of his 92 year old mother. She will be relocating a couple hundred miles to live with him, he will have to find a new single level apartment, he'll need to find care for her while he's at work etc. Watching this quickly unfold my wife and I realized that we've never discussed the extent of the care that we'd would be able to provide or willingness, the key feature of the discussion being boundaries. There are plenty of questionnaires that you fill out before getting married about sex, finances, house duties and other general topics that are supposed to prompt a greater discussion but we haven't been able to find one about extended family and elder care. At the moment our collective parents are all relatively healthy and in their 60s, but we want to be prepared having talked about it and having gotten on the same page for when in the hopefully distant future that changes. We don't want to be taken by surprise and have a discussion we never thought to have drive a wedge in our relationship 20 years from now. Does anyone have any resources they could provide or conversation prompts?
1. Recognize and accept where responsibility for your parents' future wellbeing lies. It lies with them as individuals. You can think about what kind of support you would (if possible, probably) be prepared to offer if called on, but the major decisions will not be yours to take; and much heartache is caused by people's feeling responsible for situations over which they have no (legitimate) control. So: once you and your wife have reached broad alignment, the real discussions need to take place with your parents.
2. Google "strengths-based assessment in adult social care" and do some background reading. This will help to avoid those surprises you mention, the chief of which can be the shock realization of just how *many* different and complex factors and processes are at work in any given person's quality of life.
3. Get a copy of "Being Mortal" by Atul Gawande.
The saying is: "if you want to make God laugh, make a plan." You can usefully explore your ideas and principles and become more aware of what your expectations are, but no one can factor in how they will feel about events they can't predict and have no experience of.
What about the current situation, with your FIL project-managing his mother's move? What do you and your wife both think about the decisions he is making? Hero? Control freak? Fool? Martyr?
I have already told my children that they will not be caring for us. I spent so many years caring for my parents, especially my mom and it nearly killed me.
I could never allow my children to sacrifice their lives for me. My husband feels the same way. They don’t owe us anything because we raised them.
We raised them to be independent and live their own lives. That’s exactly what they are doing. I want it to stay that way.
Caregiving totally changes the dynamics of a family. We have a great relationship with our daughters and I want to continue to have them as our daughters, not our caregivers.
My in laws had a developmentally disabled daughter. I gave my DH notice 40 years ago that I would not be taking care of her and that his parents needed to figure it out. They never did anything.
DH’s parents are gone now for over ten years and BIL has now been demanding that we take her in because they are sick of having her around and I told my husband that he needs to choose who he wants to spend his future with. He has chosen me (for now).
My in-laws thought they could exploit their DILs and put this burden on the two of us. My BIL’s wife is angry and resentful that I am refusing to help. But I’m not. They don’t get to tell me what I need to do for them.
This situation has destroyed a family. The In-laws never had a plan, just assumed DILs were the solution.
I met my DH when I was 17, married at 22. I was young and stupid. Never saw it coming in the early years of marriage. But I worked my entire life and am not forced to stay in this marriage for financial reasons if she ends up on my doorstep .
Because of this, they are the ones who have initiated the conversation about the future with me - as you are wanting to do, and rightly so.
Let me say that I have never asked them to care for me like I'm caring for my mother. I don't expect them to sacrifice their lives - I don't believe that they should feel obligated. They don't owe me for changing their diapers.
They have told me that they will see that I'm cared for and will not place me. They will do their best to keep me in my own home - they've talked about a tiny home - near them but with caregivers. They don't want to stop their lives - as I have done - to be my caregivers. Sounds like a plan to me. I told them that they can put me in a facility if they want to but they have decided that's not what they want.
However, I'm not holding them to anything - I'm not trying to extract promises from them that they may not be able to keep later in life. That's not fair to them.
I am absolutely praying that it will never come to the place where I need care. I'm trying to stay healthy and so far so good.
My advice is not to make promises that you'll end up struggling to keep.
Peace.
My sons have had a front row seat to it all. They know that hubs & I set up a Trust so that we can't be scammed out of money (or spend it ourselves). They know we don't expect them to give us hands-on care unless they really want to. I had to make it clear to one of my well-intentioned sons that I don't want him to be dong my hygiene. He hadn't thought about this possibility based on the look on his face after this comment. They know to never pay for our care themselves, no matter what. I've promised to them that as long as we have all our marbles we will transition ourselves to a senior community/facility when the house upkeep gets overwhelming (in labor and money). We've told them which one (local to him). I've schooled them on how to engage with their Nonna (my Mom) who now is exhibiting mild cognitiive and memory issues. My sons were in the loop when I transitioned 3 of those elders out of driving. I'm not trying to burden them, but to educate them. Forewarned is forearmed, I hope, for their sake. Legal and mental prep plus ongoing education is as much as can be done.
I know that I will NEVER ask my children to take me into their home. I have already made them promise not to do this when/if the time comes. After caring for my MIL and now my own mother, I would hate myself if I distrusted their lives as much as my own as been effected. My MIL had Frontal Temporal Dementia (we moved her in with us) and her care changed almost weekly, if not monthly. Sadly, she made my husband promise years ago to never put her in a nursing home. We suffered through so much with her, and it almost killed my husband to watch as his mother slipped away so quickly and became a person that we didn’t know. It was a sad blessing when she passed 3 years ago.
My own mother, who has lived with us for the past almost 5 years independently, now needs constant help and care after having Covid and a bladder infection, and being hospitalized last May for about 3 weeks. She then spent 4 weeks in a rehab facility (nursing home) for physical and occupational therapy before coming back home to her basement apartment. She now does not do any exercises, barely moves out of her recliner and for all intents and purposes acts like she’s just waiting to die. She has mobility/strength problems, cannot dispense and take her medications properly, cannot fix her own food, cannot take a shower by herself and barely can dress herself. I have cleaned up more fecal and urine accidents than I can count in the past year because she is now quickly becoming urine incontinent with episodes of fecal incontinence occurring occasionally, but more then I could ever have expected. I had to quit the job that I loved to help care for her. She’s very lucky that I was able to, because without my husband and his income, I could have never done this and she would have ended up in a nursing home.
I hate my life and now know that I am not cut out for caregiving. But, she fears nursing homes so much that she has said that if she had to go in one that she would stop eating so that she would die quicker, yet 5 seconds later she stated that she didn’t want to be a burden to me (????). The problem is that she is on the fast track to moving into a home because she refuses to try to keep up her strength. It’s almost like dealing with a stubborn 3 year old in the body of a 84 year old.
I believe that our elders still view nursing homes as some kind of institutionalized hell because they don’t realize how much things have changed. Most care homes are less institutional and more home like.
You are on the right track with talking with your husband about what you do and do not want to happen. I wish you and your family the best.
If we are all lucky, we will live long productive lives and then drop dead one day while doing the very thing that we love. No regrets. No one will be inconvenienced and no one will have to make any decisions. Unfortunately, very few of us will be that lucky.
However, I would avoid making big promises. My parents promised each other they would "never put the other in a home" and my Mom's last year at home was brutal and I think led to my Dad's decline. And he's still very bitter he's in assisted living because part of him believes I should honor that promise that Mom made to him. But you never really know what the circumstances are going to be when someone needs help. So talking about what you both want broadly — including that you don't want your loved one to become a servant to your needs — is maybe more important that the details.
I am so glad my parents documented everything they were clear they didn't want me to provide hands on care, intensive medical intervention if something happened to them and that they would move into a facility if necessary. When my father had a medical issue which meant he could never walk or talk again, have untold other issues, and he would need a feeding tube if we wanted him to survive. It took the guilt off of my shoulders as I knew he wouldn't want that, so I denied the tube and let him pass away.
My husband's mother will not do this, and I know it will cause an unrepairable rift with his brother if she needs care. His brother has already said he will do anything to keep her alive and will move her into his house if she needs more care. He expects my husband to help but that will not happen due to distance and other obligations. I know his mother doesn't want this as we have had the discussion, but she won't document it or let him know as she doesn't want to face it.
My two biggest pieces of advice:
1. Never say you will let them live with you unless you want to provide hands on care. Even if they are capable now, this could change quickly, and you will need to be prepared to dedicate your life to caring for them.
2. Never promise you won't move them into a facility. Sometimes this is the only option if they have a high level or care.
Make it VERY clear what you can and can not do, what you will do and what you will not do. (can and can't, will and won't are totally different)
I also suggest that you talk about this with your spouse. What do you want her to do for you if something should happen to you and what she wants you to do for her as well. Again, can, can't, will, won't are important.
There are Advance Directives, Living Wills that you can complete. A document called a POLST ("Practitioner Order for Life Sustaining Treatment" is much more detailed than a DNR) is a great document to have. It should be with you all the time. (It might be known by a different name is some States.)
Most important...be honest, be open and have these discussions.
What is your FIL going to do when the hired caretaker doesn't show and he needs to be at work? Has he really thought about what he is getting himself into. If I were you I'd scope out some assisted living places now before it all hits the fan and you are totally unprepared.
You...start now telling ur parents to not rely on you for their physical care or financial care. You have a family and jobs that come first. Your financial future is important. Trying to work and then coming home to care for someone will be exhausting. And a man taking care of his mother?
You can offer to give him a break from caregiving. Just remember there are options. If Grandmom has money, she can be placed in a nice Assisted Living or Memory care. If not, in Long-term care with Medicaid paying. Medicaid also has in home help.
https://www.agingcare.com/discussions/if-you-are-going-to-become-a-caregiver-480769.htm?orderby=recent
A lot of interesting points to ponder and discuss with a spouse, I think.
Reading some of the posts under the Burnout care topic with your spouse will also give you each a dose of reality.
I don't know that you can plan that far in advance!
You may have strong values you will step in & provide the care yourself? Or maybe you are dedicated to your career & know that hands-on caregiving would never be for you? Your values will shape what you will *want* to do.
What you *can* do, at some future time, will depend on so many variables. Your own health & finances, own family & other commitments.
Why not just watch & wait.
See how this current situation unfolds for your wife's family. You can all learn from that.
Then start a chat with your wife. Discuss your & her values.
With good communication you will work out a plan when you need to.
...the website is filled with difficult, painful, terrible experiences.
...a hypothetical discussion with your wife is a good idea - when the actual time comes concretely before us, answers are sometimes not clear. it's a very stressful time, when it actually happens for real.